My family loves the Affordable Care Act! My grandson was born two years ago with a rare disease called Alagille Syndrome. It affects the liver, skin, eyes, kidneys, and heart. Ben is very lucky because so far, only his liver is affected, making his skin constantly itchy, his growth is very stunted, and he has painful bumps all over his skin. He has been on a feedings tube since birth. His parents have not had a full night of sleep since his birth, but have valiantly cared for him with love and devotion. We were so lucky when he received a new liver about six months ago. The surgery was long and scary. His Alagille Syndrome, which is characterized with very small veins and ariteries made hooking up his new liver very tricky. Because his surgery was so long his recovery was also longer than normal, almost three months in the hospital. My step-daughter and her husband have good insurance, but if it wasn't for the ACA, the limits on healthcare would bankrupt them. His care has cost well into the milllions of dollars, and fortunately for them, Medicaid took over after they had been in the hospital over 30 days. Without that, my step-daughter and her family would have had to declare bankruptcy to pay for the care for their son. Ben is now doing well, finally starting to walk at two and half years old because his new liver has finally kicked in to give him strength. But he still has Alagille Syndrome, so he will need medical care for the rest of his life. He did not ask for this disease, and did nothing to deserve it. Is he and his parents supposed to live in poverty because of it? His mother, my sweet daughter, has a brain tumor that will also need attention at some point. Will she need to choose between life and death because of insurance? I certainly hope not. I am begging all those who have the power, please do not end caps on insurance. It is life and death for my family.
Gail Steinkraus, Tacoma, WA